MSUD ISRAEL (IL) Association Meeting, November 7, 2014
On 11/07/2014 in sunny Israel 8 families from all over the country gathered to celebrate one thing, and one thing only – their kids! These
happy and cheerful children have one of the world’s most rare diseases, MSUD - maple syrup urine disease.
This meeting has been the first step to reviving an active MSUD IL Association. This group was founded in order to unite all MSUD families regardless of race or political point of view in order to achieve a high quality of medical support for our children. We are an eclectic group including Jews and Muslims. This is what makes our group so special! At the reunion we witnessed a really eclectic group gathered by the same cause and by the same troubling inaction of governmental institutions. In a society like Israel it was really amazing to see the unity in such a group around the concern for the welfare of our children.
The meeting took place at the National Park of Israel at the Tel-Aviv area over picnic baskets filled with adjusted foods without or almost without any protein. The variety of the choices would’ve left the healthy person filled with envy in a good way. There were vine leaves, patties, cakes, pasta, sweet pastry and salads. The most valuable thing for parents of the MSUD kids is to be able to feed them with much taste and without any protein.
The meeting has given us the chance to get to know each other, create a connection in person and to share our personal experiences - the situation we’ve been through with different clinics, the different symptoms kids have and dealing with them, the recipes of multiple cousins and products adjustable to MSUD limitations. It was fascinating to feel the immediate connection among the group kids and parents as one.
At the meeting, after a very large quantity of very tasty food we went through the goals of the MSUD IL Association which included:
- Mapping the patients in Israel and organizing them through the Association. We have already located 15 families in Israel.
- Mapping the physicians to route new patients towards the Association upon diagnosis.
- Providing support network among the members.
- Promoting legislation for the recognition of MSUD patients as entitled for disability upon discovery of the illness.
- Promoting subsidies of metabolic products such as Anamix, Maxamaid , Valine and Iso-Leucine in the public healthcare system.
- Raising funds and starting research towards a cure for the MSUD.
- Raising public awareness of this orphan disease through personal presentations.
Our hope is that the MSUD IL Association will give us the power and influence to really make a difference in Israel and maybe worldwide.